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Objective  Care offerings vary across medical settings and between families for babies with trisomy 13 or 18. The purpose of this qualitative descriptive study was to explore nurse, advanced practice practitioner, and neonatologist perspectives on care for babies with trisomy 13 or 18 in the intensive care unit. Study Design  Voice-recorded qualitative interviews occurred with 64 participants (41 bedside nurses, 14 advance practice practitioners, and 9 neonatologists) from two neonatal intensive care units (NICU) in the midwestern United States. Consolidated Criteria for Reporting Qualitative Research guidelines were followed. Content analyses occurred utilizing MAXQDA (VERBI Software, 2020). Results  Over half of NICU staff perceived care for babies with trisomy 13 or 18 as different from care for other babies with critical chronic illness. Qualitative themes included internal conflict, variable presentation and prognosis, grappling with uncertainty, family experiences, and provision of meaningful care. Neonatologists emphasized the variability of presentation and prognosis, while nurses emphasized provision of meaningful care. Phrases "hard/difficult" were spoken 31 times; primarily describing the comorbidities, complexities, and prognostic uncertainty. Conclusion  Care for babies with these genetic diagnoses reveals need for a shared dialogue not only with families but also across staff disciplines. While perspectives differ, participants depicted striving to offer compassionate, family-centered care while also balancing biomedical uncertainty about interventions for children with trisomy 13 and 18. Key Points Care for babies with trisomy 13 or 18 has been recognized as shifting. Controversy exists across the diverse and changing range of care models. This study describes perspectives of bedside neonatal nurses, advanced practitioners, and neonatologists. Differences in perspectives warrant attentiveness to insights and dialogue across disciplines. [ABSTRACT FROM AUTHOR]

Objective  The conventional view toward the management of infants with the trisomy 18 and trisomy 13 syndromes has been to recommend pure comfort care and the avoidance of technological interventions. This commentary aims to address the recently raised question about whether there has been a shift in the paradigm of the management of infants with the two conditions. Study Design  The study design includes narrative review of the literature. Results  A body of opinion pieces and evidence has emerged indicating that there has been a recent increase in the administration of interventions, including ventilatory support and surgery, in the management of children with these syndromes. Conclusion  Based on the evidence in the literature, the author concludes that there has been a type of paradigm shift described by philosopher of science, Thomas Kuhn, in the treatment of infants with trisomy 18 and 13. More parents are being offered and choosing technological interventions, including cardiac surgery. Future investigation of the question whether intervention improves outcome, including the quality of life, is crucial in addressing the unanswered questions in this dialogue. Key Points The conventional approach to the treatment of trisomy 18 and 13 has been to avoid interventions. There is a growing body of evidence that this traditional view of management is changing. Future investigation of whether intervention improves outcome is crucial in addressing the unanswered questions. [ABSTRACT FROM AUTHOR]

Objective Trisomies 13 and 18 are among themost common autosomal aneuploidies associated with high mortality rates. Conventional management strategies offer to limit interventional support; however, some of the recent studies suggest that intervention does make a difference in terms of survival. Study Design A retrospective cohort study was performed between January 1996 and January 2016, covering all cases with such trisomies. A total of 69 cases were reviewed for clinical aspects, outcome, and management strategies. Results In almost all pregnancies with follow-up, at least one indication present for invasive testing (54/55). Invasive testing was not performed in 18.5% of such cases. All parents opted for termination in cases with prenatal diagnosis. None of the liveborns had prenatal diagnoses, thus, neonatal resuscitation and intensive care unit admission were not withheld in such infants. Major intervention was done in only one patient with full trisomy 13. Median survival for infants with full trisomies 13 and 18 was 36 and 60 days, respectively. Almost half the patients died within 1 month. Conclusion To which extent the major interventions should be withheld is an issue of debate in managing such infants; however, current approaches are subject to change, given the technological advances. [ABSTRACT FROM AUTHOR]

Background and Objectives The scope of interventions offered to infants with trisomy 13 (T13) or trisomy 18 (T18) is increasing. We describe the spectrum of care provided, highlighting transitions in care for individual patients. Patients andMethods This is a single-center, retrospective cohort of infants with T13 or T18 born between 2004 and 2015. Initial care was classified as comfort care or intervention using prenatal counseling notes. Transitions in care were identified in the medical record. Results In this study, 25 infants were divided into two groups based on their care: neonates who experienced no transition in care and neonates who experienced at least one transition. Eleven neonates experienced no transition in care with 10 receiving comfort care. Fourteen neonates experienced at least one transition: three transitioned fromcomfort care to intervention and 11 fromintervention to comfort care. The three initially provided comfort care were discharged home with hospice and readmitted. Among the 11 caseswho transitioned fromintervention to comfort care, 9 transitioned during the birth hospitalization, 6 had no prenatal suspicion for T13 or T18, and 5 experienced elective withdrawal of intensive care. Conclusion The spectrum of care for infants with T13 or T18 illustrates the need for individualized counseling that is on-going, goal directed, collaborative, and responsive. [ABSTRACT FROM AUTHOR]

Objective The objective of this study was to describe antenatal/intrapartum management and survival of liveborn infants with known trisomy 13 (T13) or trisomy 18 (T18) based on planned neonatal care. Study Design This is a retrospective cohort study of singleton pregnancies complicated by T13/T18 at a tertiary center from 2004 to 2015. We included pregnancies with antenatal or neonatal cytogenetic T13/T18 diagnosis and excluded those which were terminated or had a fetal demise < 20 weeks. We compared antenatal/intrapartum management and neonatal survival by planned neonatal care, defined as either neonatal intervention (INT), including neonatal cardiopulmonary resuscitative measures or comfort care (CC) without resuscitative measures. Results In this study, 32 women (10 with T13 and 22 with T18) met study criteria; 12 (38%) elected INT and 20 (62%) CC. Compared with those who elected INT, women who elected CC weremore likely to undergo elective induction (40 vs. 0%, p = 0.01), have an intrapartum stillbirth (0 vs. 32%, p = 0.14), and deliver vaginally (25 vs. 63%, p < 0.01). In neonatal survival analysis (n = 26), median survival was longer in the INT group compared with CC group (64 days [interquartile range, IQR: 2, 155) vs. 3 days [IQR]: 0.3, 42), p = 0.28), but survival to hospital discharge was similar (53 vs. 57%, p = 0.95). Conclusion Regardless of desired level of neonatal INT, many women who continue pregnancies complicated by T13/18 have infants who survive beyond hospital discharge. [ABSTRACT FROM AUTHOR]